hi everyone

[jhellier]

can i just ask, i am really worried that my endo has gotten worse, and through research have realised that everyone that has typed or expressed that they have if, are due for more ops. Is it a continuos thingm is this my life now, operations and tests?

[InsideOut]

I hate to be the bearer of bad news but for me it has been pain, consultations and operations for many years. I have been fairly well (relatively speaking) for the last two or three years but now I feel symptoms stepping up again and am worried that there is more endo in my bowel area. I haven't yet taken the step to get referred to the consultant yet again, knowing what it will all entail. I am doing my best not to overdo it each day - it's easy to take on too much when you're feeling well and then suffer afterwards.

[jhellier in reply to InsideOut]

oh no, see i dont really know too much about it, just what it is. are we supposed to take it easy? its like an uncurable cancer isnt it but u still live through it, its torture, no one understands not even the docs, i suspect it is in my bowel, and when i had my op and my coil i thought that was it i wouldnt have to worry about it again, but now as i am getting older and have no children im panicking, if i am to have another operation will the coil have to come out? i had stitches when it was put it and that was agony by itself, i have signed up with a new doc as i have moved but cannot make any appts for a few days. i m at a loss and i really dont know what to do and i feel rreally defeated and low that the realisation tht i will always have problems, may not be able to hae kids and that it will always get worse is crippling me

[InsideOut in reply to jhellier]

Yes it's really hard going. But I have had improvements and have gone for many months at a time without the crippling pain. We all have to be positive otherwise we'll drive ourselves crazy. I make a point of enjoying the good days. Regarding the coil (I guess you mean the mirena) I had a hysteroscopy and lap while one was already inserted so the surgeon changed for me it at the same time. One bonus - getting the mirena fitted under full anaesthetic!! I know how you are feeling but don't give up, a baby may still be possible and you may find that surgery and other care makes the endo more manageable. Take care

[jhellier in reply to InsideOut]

thank you so much for your messages. it is really that bad isnt it? I feel sorry for my partner because he will have to go through it all too! i signed up to the docs today as i have recently moved, the last few weeks i have been in agony, it has just gotten worse, i couldnt make an appt at the docs, wnt be able to for two days. im not in any pain right now but never know when it may start, im debting going to the hospital so that i csn get the ball rolling to see the consultant and have a laparoscopy to see if it has spread and at what stage i am at. do you tjink i should go hospital even though i am not in apin at the moment?

[Zolta]

Hi Jhellier. Endo is horrible disease, but with treatment and support from family/friends life is bearable. Don't despair not all hope is lost, I have had endo since a young teenager and am now 29 years old. Being on the pill most of my life suppressed it but when went off the pill to try and conceive I had awful cramping pains in my ovary where on diagnostic lap last year the surgeon drained a 6cm endometrioma cyst and found alot of endo deep in my ovary. Also have abnormal shaped uterus with only one ovary and tube, affecting only 1 in 4,000 women. Lucky me!!! My doctors said the best natural treatment for endometriosis is pregnancy, where it might not return after having a child but may hinder it's progress for a year or so. Try not to stress out too much (easy to say when going through a move) as I found it got a lot worse when I moved house (5 times in last 5 years was really stressed out!) Personally I would not have the coil as was trying for a baby so had hormone injections instead for 3 months then fell pregnant with my 1st after treatment, now am 22 weeks pregnant. Have had no endo pain since being pregnant. If you are not in pain then perhaps the endo is calm at the moment. If you are worried about any spread of endometriosis then ask for an MRI scan as that can show alot. Hope you settle well into your new place. xx